Luau’s Facebook Status today … 4 years ago I cried in a parking lot for 30 minutes because I had to pull my little one out of a ballet recital the day before the performance; 2 years later I had to pull her out of another ballet school because the school simply did not have to tools to accommodate her; today I cried because finally, FINALLY, someone get it, even better they get her! The little one is so excited for this; she did such a great job today. Thank you, THANK YOU, Boston Ballet. #NotTheOnlyCrierInTheFamilyToday

~ Diary’s Facebook status, Saturday afternoon

~

Four years ago, we tried. We made it all the way to the recital. The teacher was wonderful. The other parents were supportive. But it just wasn’t going to work. Running around the perimeter of the ballet studio during classes was one thing, but running around the stage in the middle of the auditorium during the very formal recital was another.

And for her. There were just too many moving parts for her. Waiting in a room with a hundred kids for hours on end while others performed. Standing on line – on line, Jesus, we’d barely just managed the *idea* of waiting on line – in a chaotic hallway in between shows, ballerinas running this way and that, teachers shouting directions at every angle. It was too much.

Luau made the decision. He was the one there. He had to. It nearly killed him.

He fussed over the video he’d made of the dress rehearsal. He made it every bit as special as the one he’d made for her big sister when she performed in her recital. And then he sat down and wept.

We never knew if she’d understood. We’d tried to explain. But how?

~

Two years ago, we tried again. A generous offer of support, accommodation at a local dance academy. It sounded too good to be true. Sadly, it was. She left there too.

She would ask, “When will I take my ballet class?” We had no answer. What the hell could we say?

~

A year ago, I spoke to the other parents in Brooke’s class on back to school night. I told them that she was autistic. That their kids might have some questions about her or her behavior. That I wanted them to feel free to come to me or Luau. That we didn’t have anything to hide. That we were proud of our girl.

One of the parents asked Luau if Brooke liked to dance. Luau nodded vaguely. “She does, but … ”

“Boston Ballet has an adaptive dance program,” she said. “You might want to look into it.”

“Oh God, if only,” we said to one another on the way home that night. “But why will this be any different than the last? Or the one before that? Why would this one not fall apart too? Why would this not hurt like hell again?”

It was too much. We said we’d think about it.

~

Earlier this summer, she asked for a ballerina dress. We took her to the dance shop. We bought the pony – the leotard, the tutu, the tights. The nice lady who helped us asked if she was getting ready to start a class. I stuttered. “No, she loves to dress up like a ballerina at home.” It felt pathetic.

~

She asked for ballet outfits for her dolls. We clothed each and every one.

She’d dress up with her dolls and line them against her dresser. Together, they took a ballet class in her room. And it killed me.

~

Luau called.

“We’ll try it,” he said. We prayed that they knew what they were doing.

~

There was a lot of conversation ahead of time. They told Luau about their program for children with Down Syndrome and how they were seeking to create a similar program for autistic children. They told him that if we were to participate, we’d be asked to join periodic focus groups so that we could offer our input on how to make the program better. They told him that the first step would be a trial class, attended by a team who would assess Brooke in a number of areas and determine an appropriate placement. Among them would be the Occupational Therapist from Children’s Hospital who started the adaptive program ten years ago.

~

I don’t know that I’ve ever seen Brooke so outwardly excited. I do know that I haven’t heard her say the words, “I’m so excited” so many times in a row.

The night before the class, she asked me to lay out her ballet clothes. With trembling fingers, I laid out the delicate pink pieces one by one. The tights, the leotard, the tutu, the brand new petal pink slippers we’d bought the day before.

Please God, let this work for my girl, I prayed. She can shine, God. You know she can shine. Please let this be the place.

~

When we walked in, I knew.

It was the way they welcomed her. The way they interacted with her. The way when she asked the teacher if there was an H in her name, she answered by saying, “There is! Which makes my name look closed and balanced like this –” and she turned her body into the letter H. Or the way when Brooke launched into a knock-knock joke, She laughed heartily then offered up one of her own. This was going to be it.

It was the way the OT – a 45 year veteran of Children’s Hospital hugged me back when I stopped listening halfway through her explanation of why she started the program and said with tears in my eyes, “I’m sorry, but I really need to hug you.”

It was the way that they so obviously RESPECTED my girl. The way they CELEBRATED her. The way they told me what a wonderful dancer she was. How much potential she had. The way their eyes lit up talking about how she’d get to go see a dress rehearsal of the Nutcracker. How they WANTED her there.

Above all, it was in the way they connected with my girl.

And in so doing, made magic.

My girl danced.

~

As we walked out of the studio she took my hand and said, “I’m a hungry ballerina.”

Those words meant everything.

My girl knows she is a ballerina.

She *is* a ballerina.

She always was.

And now, she has a place to dance.

~

Ed note: I really did hug the OT. I also pulled the teacher – who also happens to be a ballerina with the company – into the studio to tell her just how much this all means to my girl, and to me and to Luau. I cried, of course, and eventually so did she.

I just have to say it again. THANK YOU. To Boston Ballet, to the teacher, to the OT, to the team of people who make this possible. There are no words big enough. THANK YOU.

That was amazing. With my 2 boys, I have tried before to get them involved in things… talked to the coaches, and leaders.. explained about their uniqueness… and i always hear “its OK, they will learn to _____” (throw a ball, karate lessons, take turns, stay in line). And never once were people willing to look at it and go’ we need to change the activity to fit the kid’ not change the kid to fit the activity. It is so great to see that there *ARE* places willing to fit the activity to the kid. How amazing! Great job to EVERYONE involved. 😀

Oh how amazing, I have one with autism and one with other special health needs who wants to dance so badly but just can’t seem to make it through a class. I can only imagine the day we manage to get her in a pink tutu and watch her twirl. Happy tears for you.

I hope you still feel small when you stand beside the ocean.
Whenever one door closes I hope one more opens.
Promise me that you’ll give faith a fighting chance.
And when you get the choice to sit it out or dance –
I hope you dance.
(long been our theme song….)
Such a beautiful ballerina❤

Of her statement, I love that she chose the perfect word – “hungry” to describe her type of ballerina. Hungry. Hungry for more. I hope that soon she’s insatiable. I’ll say it again and again, the arts are restorative, healing, NECESSARY for kids, especially our kids. And this kid – more than any other kid I know, this kid has an artist’s heart.

Mazel tov, Mama. Again, you found the answer. You have a habit of doing that.

As a former ballerina, now the mom of a 5 year-old son with special needs, I am thrilled with Boston Ballet and thrilled for your family! I’m starting my son in a creative movement class this fall taught by a good friend. I hope it works half as well!

While reading today’s post, I thought of another post you wrote not so long ago. Katie had asked why you always dance in public. You said “Baby, I dance because I choose joy. I choose to live in each and every moment that I can and I choose to FEEL it – whatever it may be in that moment. If I’m moved to dance I let myself dance. Because I would choose joy every single time over worrying about what other people may be thinking.”

I am so happy for all of you, but especially for Brooke. She has found a place where she can choose joy and let herself dance.

That video did me in. The way the teacher interacted with Brooke. The way Brooke followed her every.single.move. Oh my….this is beautiful. Give that beautiful ballerina (hope she’s less hungry now!) a hug!

Reading this post at work is NOT a good idea! Had to close my office door for a good cry. Simply the most beautiful dance I have ever seen. God Bless those wonderful people in this program. I hope they understand the joy that they have brought your family and I am sure others.

Beautiful dancing, Brooke! Absolutely beautiful. :’)
“…Just past the circumstance
The first light, a second chance
No child could ever dance the way you do, oh
Tear down the prison walls
Don’t start the curtain call
Your chains will never fall until you do..” Keep Your Eyes Open by Needtobreathe

Seems like I’m always writing “thanks for sharing” but once again thank you. You’ve given me a glimpse of future possibilities full of joy. I’m hoping my girl gets to be a hungry ballerina too one day.

It’s 1:30 in the morning and I am siting in my bed reading this with a smile on my face laughing but crying my eyes out at the same time. I have a little niece who has Downs Syndrome and she loves to dance more than anything else well she dances and sings. So your story really touched my heart.. Thank you so much.

Good for your daughter that dhe can suceed in a ballet class for kids with adaptive needs….but wouldnt you have thought of that before setting her up for failure in the other classes?? I come from a mom of a special needs child, he had a heart transplant at 3 months old, but I was also a case manager for people with disabilities for 10 years,. I’,m HAPPY for your daughter, and HOPE you continue to support her needs and not live in denial!

Amanda, I’d ask you to read a post or two of my blog – any of them really – or even to actually read this one carefully before making such a reckless, hurtful and desperately inaccurate assumption about my parenting. Thank you.

I wonder Amanda if you paid enough attention to detail or even read at all in depth of those who you case managed for 10 years. Based on your comment, I would guess that they did not receive the attention they deserved.

It must be so nice to live in your smug little world from which you so freely judge others. Maybe you didn’t mean this comment to cut so deeply, but I felt it from all the way out in lurker land. I assume you meant that you are a mom of a special needs child and I hope your son is doing well after his transplant.

Amanda,
As a person providing services to families affected by autism, I am appalled and embarrassed by your comment. First of all… As a service provider you should NEVER judge a family. You have no idea what they go through. Second, If you took the time to read the post you would see that Jess and Luau spend so much time and effort trying to find ways for Brooke to participate in the activities she wants to be a part of. They have dedicated their lives to teaching the world how to make room for their beautiful daughter. Shame on you for pretending that being a case manager makes you an expert on this family. Shame on you for having the nerve to cut down this family for giving everything they have to making things work for Brooke. Maybe you should re-read this post. Maybe you should go back and read others. Denial is not a state that this family live in. They live in love, acceptance and fairness for their daughters. 10 years does not an expert make.

There is always new to learn for everybody. Now is yours to learn how to use your words to say what you where thinking because if you have really worked for 10 years with people and families with different and special needs I can’t believe you choose your words correctly or I’m hoping .

If you did use them as you wanted then ill ask you to please quit your job and choose one where you can’t hurts the hopes, the fight, the awareness, the magic and love that a kid and a family surrounded by special needs can create. Or Learn from your mistakes and even give an appology to Jess for you pretty unkind words.

We choose to try, we choose to experiment and sometimes things work sometimes they don’t, sometimes it takes 2,4,5 tries for something to happen. With all the kids every single one, the ones in the spectrum the ones consider nT. parents WILL always try to make them see how beautiful is life and help them anyway to enjoy it.. We choose to try and that is what makes our kids lucky because we choose to try and not to become a ball of nerves and make them afraid of trying.

And in my case Jess when I read this post. I was struggling with my feelings and my son small improvements. I finished it I saw the video and he came to me and hugged me as if feeling my hurting, and at the same time happy heart. So thank you. Thank you for sharing your happiness. It has helped me a lot in the years now I have in this world .. And Luau’s blog to as now I’m finally running races to do something for me to. You are an amazon family.

Wow, Amanda, you couldn’t be more wrong in your assessment. I don’t have a child with autism (hell, I don’t have kids at all). But I read Jess’s diary on a regular basis and hope that when the time comes I can be a small fraction of the parent that she is.

If you had READ the entire post you would have READ and understood that Jess and Luau had tried other classes with little success. I, too, must be “living in denial” since we have tried several different dance studios with little success. I will pray for the people you are case manager for since you are quite obviously a person lacking in empathy and compassion. I will continue to “live in denial” with all my friends who truly support and uplift. God Bless.

Your story and video really hit home with me. I am going through a similar situation with my 4 y/o (pdd-nos). She LOVES dancing. I tried one serious studio before my daughter was diagnosed and it was a MESS. I then tried something more low-key (Little Gym) after her diagnosis. The experience, at first, was interesting. My gal would not attend to the teacher. She would crawl around and feel the baseboards, lick the mirrors, etc. So I had her ABA consultant come in and spend an hour with the teacher. The change has been dramatic. Every other week we have a GREAT week where she completely seems at ease with the typical kids. Yesterday, she decided to strip down to her undies because she didn’t feel like wearing dance clothes anymore. It really was funny and I didn’t let it stress me because I know my daughter was having a fun time. (Hoping that stripping doesn’t become a trend!) I am incredibly proud of Brooke. Seeing her dance brought tears to my eyes because I’ve been there. You are great parents!

Jess, I don’t know when you changed from their real names to their blog names, but I’d like to point out there’s a reference to her real name. “The way when she asked the teacher if there was an H in her name, she answered by saying, “There is! Which makes my name look closed and balanced like this –” and she turned her body into the letter H”. Of course, there are countless names with an H in it, and you may have meant to leave that, but in interest of the girl’s privacy I thought I’d point it out to you. (I know you moderate comments, so close me like a browser window. I’m a former dancer and my dance experience wouldn’t have ended in disaster had adaptive dance existed in my tiny home town. I know you’ll delete this. Just wanted to point that out.)

Brooke is a wonderful, beautiful ballerina! She dances so freely, with excitement in every turn and leap! Boston Ballet is a wonderful place for giving ALL young ballerinas a place to shine and shine, your sweet girl does!
P.S. I love the Stretch to the Alphabet song. I’ve never heard that and you two look fabulous singing it!🙂